Thursday, December 31, 2009
I have a little block of wood in my living room that simply says "Be Thankful" on it. I bought it to be a daily reminder of what really matters. Knowing that everyday..every moment..every experience we have here on earth is a gift from God. It is a blessing we are given. We may not always think it is a blessing..but sometimes what we dont like... is Gods way of shaping us into better people. It builds character. These experiences help to give us tools to live life fuller and more fulfilling.
Iam sarting to put together a list of New Year's resolutions. Thinking of what some of them have been in the past and what I hope the future will bring. How I may or may not have control of this year's events. How I may handle "change" in the New Year. What priorities have changed... reprioritizing. Soul searching for what I want out of life in 2010.
New Years resolutions are defined as... a commitment that an individual makes to a project or the reforming of a habit, often a lifestyle change that is generally interpreted as advantageous.
That being said..what projects do I want to tackle, what bad habits do I need to break, and what unconventional lifestyle changes do I dare make?
I would like to wish everyone a Happy..Healthy..Safe..Prosperous..Successful.. Adventurous..
I will keep you posted on my New Years resolutions.....
Sunday, November 15, 2009
Tuesday, June 23, 2009
Saturday, May 16, 2009
Friday, May 1, 2009
Im loving the warm weather! Its a little dreary..but its still warm. Better than snow! Im really looking forward to this summer. Im focusing on getting things done around the house..and just tying up loose ends.
It seems this year..we have had alot of legal stuff to deal with. Paperwork to find..file..fax. This drives me nuts! But at least I feel like Im getting things out of the way.
Ive had a few doctors appointments...getting some tests out of the way that I have to have done for preop approvals. I started physical therapy for my knee. Dr Rodeo from Hospital for Special Surgery looked at my knee..he says I have instability and recommends physical therapy.
Im scheduled for shoulder June 5th. Exactly 1 year from my Anterior Cervical Discectomy w/Fusion. Happy Anniversary! The surgical coordinator told me that they would keep me for at least 48 hours because of the fiber optic intubation and the recent daignoses of sleep apnea. She also said Iam a complex case. Just my luck. I was hoping to ride home with my nerve block still in full force. So Im going to shoot for a Sunday departure. This way the traffic wont be as bad. The FDR is horrendous...bumpy & always backed up.
I feel like I have been on a marathon lately. Just really busy. I did get to meet with my friend Lisa last Saturday. We met in Danbury CT..at the mall. I had a great time. We talk almost everyday. I dont get to see her often. We met at TCI..we were both there for our first consult. So we have traveled this journey together.
The CT chiari group is planning a get together the end of May. We should have a good turn out. It would be nice to put some faces to the emails. The group has really grown. Its amazing to see how many people have joined. The more people we have..the bigger voice we have.
Wednesday, April 1, 2009
Sunday, March 29, 2009
I think this is awsome.. it is a weather link that you enter your zip code and choose aches & pains from the tool bar. It tells you how the local weather will affect you physically!!! I think this great!! I will also post this on my links.. http://www.weather.com/
I went to The Chiari Institute on Wednesday the 25. I met Dr Kula..who will now be my neurologist at TCI.. it was my follow up for the Craniocervical Fusion and to meet with Dr Kula for the narrative medical report I need for my federal comp case.
Dr Kula was very thorough..we went into the office at 4:45 and didnt get out until 9pm! Long day to say the least. I had 4 mri's & a ct that day at Mahasset Diagnostic Imaging. We went over my entire file ( or should I say 2!)..went over all my current symptoms..and how we were going to treat them. My syrinx did collapse..woe hoo!!.. but as he said...it does damage that doesnt always reverse after flow is restored. Thats why I have loss of sensation on my left side. We also spoke of the dizziness..balance..blood pressure issues..and how my cardiologist is treating them. My low back/leg pain & numbness...and hip/left leg pain. Oh..and the headaches.
He ordered a slough of tests...tilt table..ct of lower back..xray of neck and lower back..blood work.. repeat urodynamic & follow up with urologist... follow up with orthopedist..and the best is a prescription for support knee highs & some funky girdle to constrict my veins!! for the dizziness! Thats real sexy in the summer! He also wants a copy of the recent sleep study I had done. So left with alot of homework.
I had an appointment the next day for an mri arthogram of my right shoulder..so I made it an all day project..and got the xrays & bloodwork done while I was there. I have an appointment tomorrow for the CT of my lower back. Follow up with the orthopedist on Tuesday and Urologist next Tuesday.
Iam very anxious to get the results of my arthogram & sleep study tomorrow. My pcp was on vacation..hopefully he will call tomorrow. My shoulder has really been bothering me..so Im almost positve what the next step is.
My cardiologist is ordering the tilt table test. Iam still wearing the halter monitor for my heart..so Im not sure if his is going to wait until it is done to do the tilt table. I guess I will find out tomorrow. The nurse said that "Nothing Alarming" has been recorded. Next they will tell me..it is all in my head!!! We shall see.
As you can see..Ive been a little busy. I feel like having all these obsticles in my life..is like having a full time job! I started acupunture again a couple of weeks ago because my chiropractor was out of commission with back surgery!!But he is back now. Dr Kula said I should still be doing my exercises for my neck..everyday..plus massage every week. My neck has been in knots..which doesn't help my headaches & shoulder. So I have been trying everything I can to help ease the muscle tension.
Im sorry if I missed anyone's emails...I have been trying to catch up on them and clean out my mailbox. So if I didnt respond..please resend it..it may have gotten lost in limbo.
I hope everyone is enjoying our spring weather..(even if it is rainy)..its a sign that nicer weather is on its way..hang in there.
Thursday, February 26, 2009
Sunday, February 22, 2009
These are my girls. When I dont feel good..they are on my lap. Dont they look so cute with their sweaters on.
Well Iam almost 5 months post op from round 3. Iam doing well. I went a month with out a headache,,and then I have had 3 in the last week. Iam on day 3 of #3. Iam not complaining. A whole month of feeling almost "normal" is great.
I spoke to Dr Francomano last week..my geneticist. I wanted her opinion about my shoulder, blood pressure & orthostatic intolerance. She suggested I have another mri done on my shoulder to see if he damage has gotten worse. If so..surgery it is. She said that it could take up to 14 months for my brainstem to get back in the groove of things..so I should wait for a tilt table test. She wants to control my blood pressure with medication. My BP needs to be below 130/90. So this is the new goal.
Iam still waiting for the approval for my sleep study and now the mri for my shoulder. So Iam praying for patients.
I did speak to Dr Kula at TCI. I will be seeing him for my follow up next week , so that he can write my narative medical report for my federal workers compensation case. Of course its costing me a pretty penny for the report..but I really dont have an option in the matter. Im hoping to have new films taken..I anxious to see how everything looks.
The Chiari Mixer was a success. We had a total of 27 people...14 with Chiari. It was nice to meet people face to face. Iam hoping for double the people next time. The nutritionist Ive been seeing has offered to come and speak at the next get together..he said we could even make arrangements to have him meet with a couple people. Im really excited about this. I know he can help people. He has helped me.
I read a quote the other day that just stuck with me.. "Sometimes the road less traveled is less traveled for a reason" by Jerry Seinfeld. This could be taken in many ways. Some people are scared to take a road that is not shared..Or think what is the reason other people dont want to take this journey "it must not be worth it". I feel that it may be a harder path to follow..but nothing worh working for is ever easy. I think some people want everything to be easy..handed to them..or just luck. Drastic change... takes drastic measures. We choose the roads we travel..sometimes we are faced with road blocks or detours but we are the ones that choose new directions. What road are you on? are you happy with the scenery? and most important..is it taking you where you want to go?
Monday, February 9, 2009
Saturday, January 17, 2009
Iam still recovering from surgery. My hair is growing. The scar is healing. I do feel better in many ways. In other ways, things have just shifted. I dont have constant headaches or pressure. They come and go. I have had one for 4 days now. But for the most part they are not as frequent.
I have been having issues with my blood pressure. I was taken off the beta blockers back in October. My cardiologist felt I may have been over medicated after surgery. Im having dizziness when standing. It feels like Im going to black out...and then the lights come back on. My cardiologist put me on a medication for POTS (Postural Orthostatic Tachycardia Syndrome) to see if my symptoms improved. They did..but my blood pressure went up. He adjusted my dosage 4 times. It was still high. I had stopped the medication on Monday after seeing my pcp.
I went to a new cardiologist on Wednesday. My bp was 144/97. He ordered bloodwork, put me on 2 new medications and ordered an echocardiogram. He wants to see my again in 2 weeks.
The medication does help with the symptoms. So it seems to be POTS. He may order a tilt table test after my bp is under control.
I had both of my youngest children at the nl last month. My youngest son Mitchel is showing symptoms..headache, dizziness, visual diturbances, legg weakness, balance problems. My daughter is still having headaches. The doctor ordered mri's and mra's. Im no doctor..but they didnt look right to me. The nl said no, but I recently found out that someone I know went to this same dr (after a confirmed dx of chiari) and he told her she didnt have chiari!!! So of course I want a second opinion.
Iam working on putting together a Chiari fundraiser in June. I live in the Hudson Valley, NY. It will be a barbacue with chiari awareness items, raffles, gifts..ect. I will post more info as I make more concrete plans. Iam very excited about it. I love meeting new people who are affected by chiari. Its almost like an unwritten bond between people who share common challenges in life.
You are always hearing about new idea's for common obsticles we face daily in our lives. People are always drawn to people's stories of success. "How did they do that?" "What can I do differently to accomplish the same outcome." " Why are they so satisfied and happy?" For the average person...it is hard to do this. We as chiarians are somewhat of a rare breed. This makes it even more of a challenge.
Iam starting to see that we are all warriors. It is a constant fight. In every arena we enter. Whether it is finding the right doctors to treat us, to social security disability, family & friends understanding our condition and how it places unseen challenges, insurance companies paying for the right treatments, and learning to become more dependent when we need to be. Patience and perseverance have to go hand in hand. If you aren't patient you will be miserable while you are persevering. You will lose focus on what is really important.
I pray that everyone is having a painfree day. Please share any idea's you have for fundraising. If you would like to come join us, please contact me for travel info and directions. It looks as if we are going to have it the2nd or 3rd Sunday in June.
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